Transforming Life with Dementia
At the National Council of Dementia Minds, we believe people living with dementia should guide the way forward.
Our Transforming Life With Dementia Needs Analysis Report shares our real-life experiences and identifies what’s working—and what’s not working—in the services and supports people currently receive after a dementia diagnosis. It offers practical recommendations to help transform the diagnosis experience into one that is grounded in support, understanding, and empowerment.
From this page, you can access three different versions of the report:
• A full version of the report with lots of photos and visual elements
• An “easy-read” version with large-print text only
• A companion document listing all 131 of our verbatim recommendations
We also invite you to watch the video below to hear a few of our voices and learn about the key findings:
We also invite you to watch the video below to hear a few of our voices and learn about the key findings:
Discover why the National Council of Dementia Minds launched our groundbreaking Transforming Life with Dementia research project—and what we learned.
How We Arrived at These Recommendations
Thanks to generous grant funding from the Michigan Health Endowment Fund, our organization conducted extensive research in 2023 and 2024 to better understand what people living with dementia truly need after receiving a diagnosis.
As co-researchers alongside our academic partners, members of the National Council of Dementia Minds reviewed the current post-diagnosis support landscape and shared our lived experiences to identify gaps and shortcomings in the resources and services available. We focused especially on the critical first year after a dementia or mild cognitive impairment diagnosis.
Our analysis resulted in 131 recommendations to address gaps across six key areas: stigma, social, emotional, medical, financial, and legal. We then prioritized and organized these recommendations into clear, actionable steps that you’ll find throughout this report.
We hope this report encourages families, care partners, professionals, and communities to work together to build a more compassionate and inclusive world.
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